Thursday, August 10, 2017

The surgeries are coming

Years ago, when I first found out that some children with cerebral palsy undergo surgery to alleviate muscle tightness, I worried about whether Max would need it, as I worried about everything concerning his future. In a few weeks, it's happening, along with another surgery I hadn't imagined Max would ever get.

For a while now, Max's left foot has been turning inward. He's mostly steady on his feet but occasionally trips, which can be particularly dangerous because his arms don't shoot out to cushion the fall. He gets tired when he walks any great distance. When you have the spastic form of cerebral palsy, as you grow muscles and tendons can shorten (called "contracture"), resulting in gait and mobility challenges. As a child physique changes, the web of tissue that surrounds muscle and tendons, myofascia, can tighten up and become restrictive. When cut, the muscle beneath can stretch and lengthen for better agility. It's often done at the back of the ankle to alleviate calf and heel cord tightness.

A couple of years ago, a parent had told me about an orthopedist, Roy Nuzzo in Summit, NJ, who specializes in Selective Percutaneous Myofascial Lengthening, SPML. This form of lengthening, done under general anesthesia as an outpatient, involves micro-incisions. The benefit is that less scarring forms, a good thing since scar tissue can cause recurrent contracture.

During our consult, Dr. Nuzzo asked if we wanted to also remedy Max's tendency to drool, given that he would already be going under general anesthesia. We have never succeeded in stopping it. The wetness makes his face chapped during winter and soaks through shirts when he does not wear a bandana. Botox injections to the salivary glands didn't do the trick (although I still think someone should open a Mommy and Me Botox clinic). Once, I took Max to see a doctor who reversed salivary glands so fluid would flow back into the mouth, but it seemed pretty extreme and I didn't want to subject Max to it. A couple of times, I got a prescription from Max's neuro for the scopolamine patch, which is used to treat sea sickness and is also effective for drying up the mouth. The boxes of patches sat in a cabinet in our kitchen, unused until they expired. I couldn't bring myself to medicate Max if it wasn't critical and, just as importantly, he himself didn't ask to remedy it.

Last February, we had a conversation about it after he made a comment. And then, a few months later, he point blank said to me, "I don't want to drool." I am not sure what triggered that, but as he's getting older he's become more aware of his body. While he did not specifically say he doesn't like it when people stare, and I wasn't going to point that out, I wondered if it was part of it.

Dr. Nuzzo told us about an ENT, Stephen F. Freifeld in Springfield, NJ, who does a surgery for drooling called tympanic neurectomy that involves going through the ear canal and dissecting the tympanic nerve, a supplier for a major salivary gland. We did a consult and while Max was on the older end of youth he'd treated, he thought we could get good results. (He wasn't sure why younger kids had better improvement in drool control.) There would be minor discomfort for a couple of days; recovery is typically quick. The downsides: mouth dryness, As with the patches, the resulting downsides could be dryness of mouth and a ruptured ear drum. The doctor noted both were rare among the two hundred plus patients he'd operated on.

Although studies of children with spastic cerebral palsy who'd had SPML were small, including this one that examined 58 kids, they found no complications and improvement. Several parents I connected said their children had excellent results from Dr. Nuzzo's surgery. The studies done on tympanic neurectomy were even smaller and pretty old, but positive. I looked up both doctors on the Federation of State Medical Boards, and no actions had been lodged against them. I double-checked their credentials on the New Jersey Division of Consumer Affair to see if they'd had any malpractice suits, disciplinary actions in state or out or other issues. Both got a clean bill of health. Max's neurologist and pediatrician gave their OK.

I also did due diligence with Max. I explained that he'd go to a hospital and doctors would do an operation to help his foot and his drooling. I reminded him how he used to get Botox injections when he was younger at a hospital, and that he'd be asleep when they did them and wouldn't feel them. I showed him the expired box of patches that he could choose to wear behind an ear instead of one of the surgeries. Did he want to get the surgeries? He said yes.

One of the biggest responsibilities you have as a parent is making decisions about healthcare for your child. These surgeries, particularly the one for drool reduction, are not essential. General anesthesia is involved, and while it's considered very safe these days, still: anesthesia. While Max was in on the decision and I did my best to explain the procedures, am I sure Max fully got it? No. (I'm thinking that when he's back from camp, maybe I'll do an "operation" on him using Ben's toy medical kit to help him better understand/soothe his nerves...or he can operate on me.)

Still, the benefits of these surgeries seemingly outweigh the negatives: Max will have a lower risk of an injurious fall, why we'd rather do the SPML sooner rather than later (and he is getting too old for the other surgery). Both surgeries are less complex and involved than others of their kind. There isn't significant discomfort or recovery time. By having two of them at once, Max will avoid undergoing another round of anesthesia. His drooling will be less of a nuisance to him, and less of a social impediment.

All in all, Dave and I believe these surgeries will improve Max's well-being, quality of life and comfort. As always, we hope we're doing right by him..and we hope for the best.

17 comments:

I'm glad Max was able to express to you about the drooling. But still hard decisions to make as parents.

Luke (14) still has 1 more surgery associated with his cleft lip/palate. Part is functional, part is cosmetic. Plans haven't been made yet, but I wonder if it is fair to do the cosmetic because I think it needs to be done.

I have so many thoughts on this one but I am also so many years behind you on the road. My son who has CP is 5. We are trying Botox for his spasticity (more dystonia than spasticity really) which is why a surgery like Max's would work for us. I've also been told that Botox can help with drooling, though of course it's not a permanent solution. He's had so many surgeries this far, I think I have PTSD from it all. I understand your fears and I appreciate your due diligence.

We did an SPML with alcohol block with Dr. Nuzzo for Josh a few years back. The results were really great and bought us time before we did the full osteotomy. Hoping for wonderful results for Max as well!!

One thing I learned while getting my kid through 12 surgeries in three years (which ranged from 12-hour open hearts to 4-hour laparoscopic deals): The only "minor procedure" is the one happening to someone else's kid. Figuring out if and when to do these operations is so difficult, and there has always been a moment during post-op recovery when I've wished we just never started. But -- it sounds like you've done a fantastic amount of research and thoughtfully weighed up the risk/reward ratio and made the best decision you can. I especially love how you included Max in the process. (That's something we haven't been able to do yet for Violet, but I think a lot about how to navigate in the years ahead.) When it comes to preparing him for the big day: Doctors kits are fantastic (and yes, letting him "operate" on you, because it gives him control; we also do this a lot now to help V process what she's been through). For her last big surgery, I also made a photo book of all her previous ops, including pictures of her in the hospital and our favorite parts of the hospital. She loved it and I think it did make things feel a little more familiar. Taking a tour of the hospital ahead of time can accomplish the same thing. And then talking through what to expect and what will happen when, in as much detail as you can -- which I'm sure you're already all over. Good luck -- will be rooting for you all!

I love what you said about no surgery being minor unless it's happening to someone else's kid. My 3 year old has had 3 minor surgeries (g tube placement, bilateral orchiopexy, and tonsillectomy/adenoidectomy) plus countless procedures, some of which were sedated. None of them felt minor in that moment, plus even with minor surgeries, there are still risks. After my son had his tonsils out, he ended up having severe hemorrhaging (think horror movie...blood pouring out of his mouth, screaming and thrashing like he was possessed, blood covering the bed, him, and me, etc). If we hadn't already been back at the hospital, he could very well have bled to death. Handing your child over to a surgeon is hard no matter how big or small the procedure is.

Very well stated. The hospital that my son (14, autism, non-verbal) goes to (St. Louis Children's) has Child Life Specialists to help him through everything. They even made it possible that he didn't have to be sedated for an MRI.

My son is almost 3 and has spasticity on his left side. I am concern that he will has contracture as he grow even when his therapist says his tone is not that bad and he already wear afo for his ankle. What is your thought on SDR (selective dorsal rhizotomy)?

We did a different surgery to help my son (also named Max) with his drooling (removed some of the salivary glands and kind of blocked off others - something like that, but it wasn't tympanic). It was very successful, and it's been a *huge* quality of life improvement to not have the smelly bandanas and soaked shirts, plus facial irritation. It's been a few years, and while he does have some dry mouth, he still produces adequate saliva for eating and regular function. He was too young at the time to participate in the surgery decision, but we're glad we did it.

You are, of course, handling this in the most thoughtful way possible. We will all be sending healing thoughts. And it's wonderful that Max was able to process this--ask about drooling, get more information, then decide he wants to stop. Very empowering for him. And reassuring for you, as you make these decisions, I'm sure.

I hope his surgeries go well. My son has an eye issue which causes his eyes to turn inwards sometimes. He can have surgery to correct it, but per his ophamologist, it's only cosmetic. If there was a functional reason for it, I would have Buddy do the surgery. Since there is no functional reason, we're waiting until (if) Buddy decides he's bothered by it and wants to correct it. Long story short, I think you are making the best choice for your son. The drooling bothers him, and you are giving him a chance at fixing it.

It's so hard when our children become aware of their differences. They go through so much physically. It's not fair that they have to deal with emotional consequences too.

You need to explain to Max he'll feel better but it will take awhile. I've had my share of surgeries, including dual hip derotations when I was around his age. It took me close to a year to relearn how to walk with a lot of therapy. If it will help Max in the long run, I say do it sooner rather than later

I hope that the surgeries go well for Max. I think it's great that you are having them both done at the same time, as it'll cut down his recovery time/nerves of having to go under again.

I had my heel cords lengthened at age 8. When I was 14, my doctors did a 3 in 1 operation on me, bilateral hip releases, bilateral hamstring releases, and bilateral rectus transfers. When I was 8, the surgery was my parent's choice, entirely, and it was a necessary choice, for continued improvement of my mobility. For my surgery when I was 14, I made the decision for that myself, my parents left it up to me. I have to say that being responsible for the choice was scary, but important. I think it's wonderful that you are the same way with Max. It's important to have a say in what happens to your body. I wouldn't change my decision, and I feel that it was an important one for me beginning to learn to speak my mind and advocate for myself, so maybe Max will have a similar positive experience in that regard.